
upcoming
events

Wed, 01 Apr
Sat, 11 Apr


Wed, 15 Apr
Fri, 17 Apr17 Apr 2026, 00:00 – 23:59Online PlatformsOn April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
Wed, 22 Apr22 Apr 2026, 00:00 – 29 Apr 2026, 23:59Online PlatformsWorld Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
Thu, 23 Apr
Fri, 24 Apr
Sat, 25 Apr
Tue, 28 Apr
Wed, 29 Apr29 Apr 2026, 00:00 – 23:59Online PlatformsInternational Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
Fri, 22 May22 May 2026, 00:00 – 4:50CF Genes Day, South AfricaSACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
Fri, 12 Jun12 Jun 2026, 09:00 – 16:00Johannesburg, Illovo, Johannesburg, 2196, South AfricaJoin us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.
We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.
upcoming external fundraisers

Wed, 01 Apr
Sat, 11 Apr


Wed, 15 Apr
Fri, 17 Apr17 Apr 2026, 00:00 – 23:59Online PlatformsOn April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
Wed, 22 Apr22 Apr 2026, 00:00 – 29 Apr 2026, 23:59Online PlatformsWorld Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
Thu, 23 Apr
Fri, 24 Apr
Sat, 25 Apr
Tue, 28 Apr
Wed, 29 Apr29 Apr 2026, 00:00 – 23:59Online PlatformsInternational Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
Fri, 22 May22 May 2026, 00:00 – 4:50CF Genes Day, South AfricaSACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
Fri, 12 Jun12 Jun 2026, 09:00 – 16:00Johannesburg, Illovo, Johannesburg, 2196, South AfricaJoin us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
patient events
If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, contact us.

Fri, 22 May22 May 2026, 00:00 – 4:50CF Genes Day, South AfricaSACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
Fri, 12 Jun12 Jun 2026, 09:00 – 16:00Johannesburg, Illovo, Johannesburg, 2196, South AfricaJoin us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
ACTIVities
Help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community by registering to be a RARE ACTIVist.
Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.
#Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team and use your mobility to the benefit of those without it.

community events
Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Contact us or follow us on Facebook for regular updates.

Wed, 01 Apr
Sat, 11 Apr


Wed, 15 Apr
Fri, 17 Apr17 Apr 2026, 00:00 – 23:59Online PlatformsOn April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
Wed, 22 Apr22 Apr 2026, 00:00 – 29 Apr 2026, 23:59Online PlatformsWorld Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
Thu, 23 Apr
Fri, 24 Apr
Sat, 25 Apr
Tue, 28 Apr
Wed, 29 Apr29 Apr 2026, 00:00 – 23:59Online PlatformsInternational Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
Fri, 22 May22 May 2026, 00:00 – 4:50CF Genes Day, South AfricaSACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
Fri, 12 Jun12 Jun 2026, 09:00 – 16:00Johannesburg, Illovo, Johannesburg, 2196, South AfricaJoin us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
webinars

We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.
Register for an upcoming webinar below, follow our Facebook page for updates and webinar details or enquire about hosting a webinar of your own with us.
No events at the moment
conferences
Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world.
No events at the moment
awareness months
Awareness months serve to draw attention to and create awareness of illnesses and conditions.
With more than 7000 known rare diseases there are a significant number of awareness days throughout the year. If you feel we have missed one, please let us know.
upcoming awareness months

Wed, 01 Apr
Sat, 11 Apr
Wed, 15 Apr
Fri, 17 Apr17 Apr 2026, 00:00 – 23:59Online PlatformsOn April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
Wed, 22 Apr22 Apr 2026, 00:00 – 29 Apr 2026, 23:59Online PlatformsWorld Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
Thu, 23 Apr
Fri, 24 Apr
Sat, 25 Apr
Tue, 28 Apr
Wed, 29 Apr29 Apr 2026, 00:00 – 23:59Online PlatformsInternational Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
Fri, 22 May22 May 2026, 00:00 – 4:50CF Genes Day, South AfricaSACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
Fri, 12 Jun12 Jun 2026, 09:00 – 16:00Johannesburg, Illovo, Johannesburg, 2196, South AfricaJoin us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
